May is Ehlers-Danlos Syndrome Awareness Month. And, as I’ve done in the past, I am using my blog as a place to help raise awareness about this genetic condition. Why? Because, lucky girl that I am, have Ehlers-Danlos Syndrome.
You can read my posts from past years (2009 & 2011) for a lot of detail on what the disorder is, how it has affected my life over time, etc. But in short, Ehlers-Danlos Syndrome is a connective tissue disorder. EDS causes your body to make jacked up faulty collagen. And since a lot of your body is made up of collagen (especially tendons, ligaments, skin, internal organs) this is a bad thing. My primary symptoms are chronic pain in all joints and dislocations in many joints. There is no cure for EDS and since it is relatively rare there isn’t a lot of financial motivation for companies to research it. All you can do is manage the symptoms.
I still wake up in pain every morning, hurt all day long, and hurt all night as I toss and turn trying to sleep. But it’s become a part of me…the pain. One gets used to it after a fashion, as sad as that may seem. I don’t think about it as much anymore and it isn’t all-consuming as it used to be.
The biggest change since last year is that I am now successfully off of all pain medications. None, zero, zip. This is a *big deal*. I had been on numerous medications for several years and I swear that they were more harmful than helpful to my body. I take the occasional ibuprofen now, but that’s it. I’ve continued a strict regimen of physical therapy and exercise and that is helping a lot. I also strongly feel that my whole foods, mostly organic, vegan diet has had a lot to do with helping my body do better within its limitations.
So for some happy news, here are three things that I couldn’t do last year because of the EDS symptoms, but now can do:
- I can now wear high heels without pain (yay for sexy shoes)
- I can hike on rough terrain without dislocating ankles and knees
- I can go dancing until the wee hours of the morning with no ill effects (to my joints anyway <insert snark here>)
To learn more about Ehlers-Danlos Syndrome, check out the Ehlers-Danlos National Foundation , Ehlers-Danlos Network, and the awesome resource list built by the amazing librarian Rick Roche: Ehlers-Danlos Syndrome: A Reference Librarian Looks at Consumer Health Reference Sources.